Bent Like A Pretzel

PT Evaluation Day

Had my physical therapy evaluation today.  I had two therapists do the eval, one a student and one an experienced therapist.  I certainly hope I didn't scare the student away!  Physical occupational and speech therapists are generally quite jolly people, so we are sympatico in our approach to life.  Or maybe they are just closet sadists that really are jolly about hurting people, but I don't think so.  They are generally upbeat all the time, whether they are increasing your range of motion or talking about the weather.

I had some pain during the eval, a few times I actually shed a few tears [thank heavens I was face down at the time] but I am in general stupidly stoic.  Must be my stubborn German ancestry coming out.  The experienced therapist told me she thought I had a great deal of pain tolerance (nice of her to notice since she was trying to see where it ended) but my toes gave me away - good poker face, but apparently my toes were curling when the pain started getting bad.  Drat those toes!  They are almost always in shoes where no one can see them.

I still have no reflexes from the knees down.  My right leg is weaker than my left leg - which is no surprise.  My left leg is a quarter inch longer than my right leg, which was a surprise - but apparently there is an exercise that can help with that.  Some moves made my feet more tingly, and a couple of positions they pretzelled me into were quite painful not only on my sciatic nerves and hamstrings, but my pudendal nerve area also.  They mentioned a femoral nerve problem, but am not sure if the test was positive or negative for that.

I came out of the session with a couple of exercises to do, one to "glide" my sciatic nerve through the muscle structure of my legs and hips, and another to help correct my leg length difference.  Neither are hard, but I feel very weak in my lower legs, so it will be a challenge.  I was so afraid there would be nothing they could do so am glad I have something to work on.

The Headache is behaving itself, The Belly is grumbling and trying to put out feelers of pain (it got a little scrunched today), and The Legs are having a fit.  I started getting extreme spasms of pain starting at 45 minutes to midnight, and am still having them although they are dying down a bit.  The pelvic pain started at the same time, so hoping tomorrow I will be able to drive.  I have a two hour drive to a client, several hours of training and walking to do when I get there, and a two hour drive home.  I don't have anything for the pain except the Soma, and 1) the physiatrist took me off that medication and 2) I have to drive tomorrow so I don't want to take any risks for alertness.  I am just buckling down, gritting my teeth, and riding it out.  I certainly hope it quits soon, as the pain has started radiating down my legs in addition to the spasms.  Sigh...BIG sigh...

I have another physical therapy session Wednesday so I will be giving them some feedback about the pain.  This is what happened to me several years ago when I tried PT before.  I experience some pain during the sessions, but later is when it gets extreme.  The therapists suggested I get with a pelvic floor therapy specialist for the pudendal nerve pain, but my fear is that agressive treatment of that will end up with me laid up for a week or two unable to walk and I simply have no time for that right now.

The area of the radiation field from years ago is very sensitive to touch and perceives even light touch as pain so I am supposed to try to desensitize my skin and retrain it as to what is normal sensation.  Didn't know you had to train your skin!  The therapists said that I need to have deep tissue massage and myofacial release done but I won't be able to tolerate it until I am able to get this overreaction under control.  They want to do a case study of me because they don't see many people with my type of problem - not related to a spine issue or an accident.  Glad to be an object of interest I guess!

Gonna try to go to bed, hot needles are being poked in the bottom of my feet and up my shins now.  Starting to jiggle the legs in the dance of pain.  Hoping that this will be the end of the pain for a few hours.  The therapists acted surprised I was still working.   I told them I just want to improve my ability to work - pain I can handle but loss of function I can't. 

I was so excited about getting the PT done because I want so much to do better at being able to stand and walk for work.  We are such a small company I feel like I'm not being a good team member because I can't carry my share of the "go-live" support like I used to.  Travel is becoming such an issue - carrying luggage is a problem, stairs are problems, driving is a problem, standing in line at airports is a problem.  I just want to do my job and it is frustrating to keep hitting limits I have no control over. Looking forward to a better day tomorrow!   Will try to stretch the pain out tonight - using the cat in this video as a model of relaxation!!!

Nagging Neuralgia

No Sleep For Me

Drove two hours to a client Tuesday evening, walked and walked and walked and stood and stood and stood for the next two days, and drove two hours back Thursday evening.  The new cane did help some with being able to continue walking and to help with the standing.  The pain is about the same standing or sitting so I guess the only difference is that my legs feel really weak so standing requires more effort.  Had a pretty good day at work today, although in quite a bit of pain I was productive.  This evening is another thing entirely.

The sciatic nerve, which was put to rest for a few days by the solumedrol shot I got on Monday, is awake.  It is REALLY really awake, burning down my right leg and curling around the bottom of my foot.  I can't sleep for the durn thing.  Regretting my decision to not get more narcotics at the moment.  Soma alone is not cutting the mustard with this level of pain.  Too much walking, too much driving, too much standing and now I'm paying the price.  The pudendal nerve is acting up too...at least The Headache and The Belly are behaving this evening/morning.

No travel scheduled for next week, thank heavens!  I have travel scheduled the week after that though, and travel scheduled at the end of May.  Will continue to try to tough it out, but I don't think I'm quite tough enough.

Nerve Agony & some Relief

Pudendal Pain and Sciatica

My neuropathy has been going off the scale painwise the last few days.  Went to urgent care Tuesday afternoon just to make sure I didn't have a urinary tract infection or a problem with The Belly.  Sometimes I get in so much pain everywhere it get's hard for me to determine what is happening.  When the tests for that came up negative, I then got an appointment with my PCP yesterday to see what I could do for the nerve pain.  He presecribed a medication that is in the muscle relaxant class, but seems to disconnect the nerve pain somewhat from the brain, called Soma or carisopordol. 

I am down to where it is very painful to walk, lie down, stand, sit, or drive a car.  I think its a combination of all the walking and standing I did at the client's last month, the prodding and poking at my cancer exam, and trying to clean house like a normal person (mop and vacuum).  My feet are freezing, but the pain is like fire through the bottoms of my feet.  The muscles in my right leg are all bunched up (the right side is more painful this time) and I have nerve pain right through the middle of me in the "saddle" section.  The percocet I have doesn't even touch this level of pain.

My PCP said that lack of sleep lets the pain build up because sleep lets the nerves discharge and the muscles rest.  Well, I've not been able to sleep well for months, but last night I was able to.  He said I need to just sleep for a couple of days, take the percocet and Soma and see if I can get the aggravated nerves to go back to sleep.  Not sure if I can, we are short handed at work.  Not sure if I can work, I am so in pain. Augh!

I was able to work from  home yesterday, but the problem is that sitting up very long is very very painful.  I haven't called in yet.  I feel so bad for my bosses.  I just get myself where I maybe can be really productive and something like this happens.

My PCP and I discussed my longterm prognosis with this being from radiation side effects.  Not good.  Probably more pain, more disability in my future.  However, I did sleep last night with the Soma. I am in quite a bit of pain now, thinking I should take another one (one every twelve hours is the script and it's been over 12) but will check with the office first.  I wonder if it helps headaches?  The percocet makes The Headache worse.  My PCP seems to think I have high tolerance to pain, but I feel like my pain tolerance is very low for me.  Maybe he sees more people with pain, and in comparison I'm tougher??  Or maybe he just wanted to boost my spirits.

Here is a pain scale from the Pudendal Pain website I found, it is one of the best pain scales I have found out there because it describes in detail the levels, although some migraine sufferers I know can have pain in the 9 or 10 range also.  I think I am at an 7 with the nerve pain going towards a non-functional 8.  Maybe I should take the medication, eh?

 

Comparative Pain Scale
	0	No pain. Feeling perfectly normal.
Minor Does not interfere with most activities. Able to adapt to pain psychologically and with medication or devices such as cushions.	1 Very Mild	Very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.
	2 Discomforting	Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test.
	3 Tolerable	Very noticeable pain, like an accidental ut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don't notice the pain. You have adapted to it.
Moderate Interferes with many activities. Requires lifestyle changes but patient remains independent. Unable to adapt to pain.	4 Distressing	Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.
	5 Very Distressing	Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.
	6 Intense	Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain.
Severe Unable to engage in normal activities. Patient is disabled and unable to function independently.	7 Very Intense	Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.
	8 Utterly Horrible	Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.
	9 Excruciating Unbearable	Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.
	10 Unimaginable Unspeakable	Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

I Could Use a Leg Replacement

If I buy 12 will they make it a Baker's Dozen?

My sciatic nerve is inflamed and both of my legs have no strength, but the right one is especially bad. I guess I know now what they mean when someone gets on your last nerve - that specialist must've found it and poked it! The pain is bad enough tonight I am getting the pain jitters, and that is after taking a muscle relaxer, heavy duty ibuprofen, and Ultram. What's more, The Belly is starting the body revolution again, and my innards are kicking a fit. However, I did eat some "real" food this evening so its hard to tell if The Belly is mad at the food or the ibuprofen.

I have lost nine pounds in the last two weeks - that's what non-stop pain does for me. I eat when I'm happy, and I've been happy A LOT in my life. When I'm stressed or ill I quit eating, and that's where I've been for awhile. I've been trying to be joyful and get my mojo back and less mindful of my body but its not working too well. The joyfulness is OK, but the mojo is not happening and my body has a non-stop failure record to keep me occupied with it. I think I need a new chipset.

My PCP who prescribed the muscle relaxer and the ibuprofen to take along with the Ultram suggested I get a spinal cord stimulator for the bottom of my spine. Well, wouldn't I be something - an occipital stimulator at head level and a spinal stimulator at butt level!!! Kinda android like wouldn't you think?? Not sold on this idea - some of the testing I will have done next week is to see if my pudendal nerve is still intact and functioning (a pudendal nerve latency test). If its fried to a crisp by the radiation, I don't think a spinal cord stimulator is going to be any help! The MRI I had last week only showed mild DJD, with no cancer and no nerve entrapment. The degenerative joint disease would be a normal finding for someone my age.

This is definitely putting a damper on my bicycle obsession. I have found a couple of great buys on Craigs list for small framed bicycles, but don't know if I can even ride one now with my legs acting up. That's why I am contemplating the mannequin legs - perhaps a relacement would work better! I don't mind if they are used - that means they worked at one point in time.

The Headache is behaving itself today, but today is the best point in my headache cycle. At least The Headache is not trying to trump The Legs, but I'm pretty sure The Belly is going to give them a run for Most Pain tonight.

No work yesterday because I spent all day at doctor's being tested. When you have had cancer it seems they test test test test everytime you have something happen. No work today or Tuesday because I can't hardly walk let alone drive. I thought for sure something was working this afternoon and I would be better, but this evening has been a total bust. Probably walked a little too much when the pain let up - the last time this happened I ended up not walking or sitting up unless absolutely necessary for a couple of weeks.

When I bought my medication yesterday the clerk told me that she felt how I looked. How are you supposed to take that? Since I was feeling very down and in pain, I figured I looked like hell warmed over. The shuffle that is my present walking style probably doesn't exude energy and peppiness either. Even the bottoms of my feet are burning and tingling. I probably was lurching around like Frankenstein's Monster. Next thing you know, I 'll get asked to dance to "Puttin' on the Ritz" in order to demonstrate my balance and function!!!

Post Radiation Neuralgia

Pelvic Pain

I should have know yesterday was too good to last. The Headache is normal intensity today, and The Belly is feeling pretty good because it doesn't have to grind on food at the moment, but the nerves in my saddle region are on fire. I actually woke up from deep sleep whimpering and curled in a ball from the pain.

This pain is almost impossible to describe because it is inside riding right along the pelvic arch. I think it is acting up because the doctor was punching around on me the other day. The pain is mostly a background issue for me, but once in a while it flares up into pure lava flow agony. I am taking maximum trammadol today, and it's making a minimal dent. If it keeps up I may have to go get some muscle relaxers - that generally stops the leg issues.

I have found I can't stand for long since the radiation therapy five years ago, and I probably shouldn't have pranced around Wal-Mart with my shopping cart full of heavy items, and then gone home and cleaned. I did manage to finish my mopping this morning, but it isn't as complete as I wanted.

I am sure my two 13 hour driving days to Cleveland last month didn't help me with this issue, but travelling by plane is such a problem for me because of the security lines. Driving isn't too great, but I can take breaks when I need to and I use the cruise control as much as possible.

I'm just going to go lay down and curl into a ball - that removes the tension on my sciatic nerves. The physical therapist I had a few years ago said that she felt from her evaluation that I have scarring of the dura layer of my lower spine tethering the nerve roots in the sacral area from the radiation. Just one more broken bit because my warranty expired at 40, and I don't have an extended package.